Sunday, October 14, 2012

HOME

I am very happy to report that Mason had his shortest hospital stay yet for a surgery! He was HOME in less than 48 hours after Monday's back rod expansion surgery. That's a record for him! He is still sore, especially when he tries to do too much (keeping up with our other kiddos), but overall he has done extremely well. He has a new 2 1/2 inch incision in his mid back where the doctor went in to extend both rods. The toughest part about being home is making sure he doesn't play too hard with brothers and split that incision open!

Mason has many super hero scars.....

he is one very tough little guy!!

Yesterday I had the opportunity to attend sweet Mia's funeral. I say opportunity because, although it was so heartbreaking and sad, there was an abundance of love, unity, and faith that filled the chapel. So much, that it was very powerful! Mia was a lovely, pure, and fun little girl that was very loved. Her short 4 year journey here on earth touched a countless amount of people! This funeral was a beautiful celebration of her life. Absolutely beautiful! Despite the fact that Mia has gone HOME to live with our dear Father in Heaven, her family looks forward to the day that they will get to reunite with her.

As I cried with heartache for Mia's family at the service yesterday I was comforted in knowing we are never alone. Our Savior will always be there for us through every painful moment and trial in our life. Additional comfort came to me as I looked around the congregation and saw about 40 'heart moms' united in support for Mia's family. I feel grateful to be part of such a wonderful 'heartmom' group! I am also grateful for the knowledge that families can be together forever.

I will honestly say at times like this I almost feel guilty that Mason is still with us in our earthly HOME. In the medical world he really shouldn't have lived past 3 days old, but obviously our little miracle kiddo has a very important mission here on earth. Other heart angels have an important mission in Heaven. Mia's returning to her Heavenly HOME hits very close to my heart, because I often worry that I won't be ready if Mason is called HOME at a young age. How can any parent ever really be ready???

That being said, I will continue to live one step at a time, one day at a time, cherishing life with each and every one of my wonderful children! Enjoying life together as a family!

3 comments:

You are in our prayers! I used to really struggle with "survivor's guilt." I still have times, less frequently, and have to remind myself that there is so much in God's plan I don't understand. And to remind each of my children to use their lives and talents to spread the word of God - not knowing when their work on Earth will end. living each day in faith...and sending lots of hugs and prayers your way.

There has been a trust fund set up on behalf of Mason Andrew Strickland. You can donate by calling or visiting any Wellsfargo branch.https://www.wellsfargo.com/locator/OR by clicking on the "Donate" button below.

Mason Andrew Strickland was born on November 30, 2007! He came 3 weeks early at the American Fork Hospital, weighing in at 5 lbs 8 oz . He is the baby brother to 3 brothers and 1 sister. At 3 days old he became very sick at home. After a trip by LifeFlight to Primary Children's Hospital that afternoon he was diagnosed with a variation of Hypoplastic Left Heart Syndrome. Mason will need at least 3 open heart surgeries before he is 3 years old. He had his first surgery when he was 10 days old and spent 7 weeks in the hospital. He had his 2nd surgery at 6 months old and only spent 1 1/2 weeks in the hospital. Mason also has issues with arythmias which has caused him some scary moments, a 2nd trip by Life Flight, and more time back at Primary's PICU. We feel blessed for everyday we have him here with us. We have created this blog to follow our journey through life with our little broken hearted baby, Miracle Mason (with a few tid bits about the rest of the family too).

It's now October 3, 2009 and Mason's story needs be updated. In April 2009 Mason was diagnosed with lowered heart function (or heart failure). From April through now he has been on medications and oxygen to help improve his heart function. In August, with no improvement seen in his echos we began the process to list him for a heart transplant. He is unable to get the 3rd surgery (or Fontan) as planned because of his heart failure. On Sept, 3, 2009 he had his pre-transplant Heart Cath (the last thing needed to list him for a new heart). The results that day have left us heart broken. He was diagnosed with severe pulmonary vein stenosis and is unable to receive a heart transplant. He will now need a heart-lung transplant, if he is a viable candidate. Since Primary's does not have a heart-lung program we are seeking opinions from other hospitals (outside of Utah) at this time. Even though we are extremely saddened with his most recent diagnosis, we continue to find joy in our journey with our special child of God, our sweet Mason.

(In November 2009 we learned of another possible option for Mason. CHOP and Stanford have both talked to us about doing just a heart transplant to his own one healthy lung. At this time we are exploring that option and the possibility of it being another true miracle for "Miracle Mason".)

February 16, 2010 Mason and I (Mom) flew to Palo Alto, California to do a few last tests and get Mason listed for a new heart(heart only!! not heart-lung!!) at Lucille Packard Children's Hospital at Stanford. We are excited and nervous to start this new chapter of our journey.

March 3, 2010 Mason was officially listed on the Heart Transplant waiting list as a 1B status. Mason and I will wait here in Palo Alto until he receives the miraculous gift of a new heart. We miss our family at home very much!

April 4, 2010 (Easter morning) Mason received his new heart. It was the best Easter gift our family could ever be given. We are eternally grateful to his donor family who during their time of loss selflessly gave our Mason a second chance at life.

July 16, 2010 Mason and Mom flew home to Utah to reunite with their family. Mason is still very immunosuppressed in order to avoid rejection of his new heart, but definitely happy to be home playing w/ his brothers and sister!!

January 30, 2012 Mason continues to do well with his new heart. He finally came off of steroids after 18 months in October 2011! Mason is walking with the help of a walker in hopes to walk alone soon. He conitues to have a few episodes of a pneumonia each year, probably due to only having one working lung. He also has a few new issues we are facing .....sleep apnea and severe scoliosis. But, over all he continues to face life with a fight and a big smile!

April 11, 2012 Mason had back surgery because his scoliosis had worsened to a curve of 75% (normal is 0-15%). He had two rods placed in his back, better known as the VEPTR (Vertical Expandable Prosthetic Titanium Rib). It was a rough recovery, but after about 8 weeks he was feeling much better. Every 6 months he will go in for a minor surgery to extend the rods to keep up with his growth.

May 25, 2012 We finally got into a sleep doctor and she diagnosed Mason with sleep hypoxia, rather than actual apnea. Because of narrow airways his sats dip frequently through out the night, but he doesn't completely stop breathing (good news!). So he was perscribed to be on one liter of oxygen at night while asleep.

July 20, 2012 Mason finally walks all on his own!!

Not a day goes by that we don't think about Mason's donor family who has given our little miracle boy the gift of LIFE! Thank you where ever you are!